THE FACTORS LEADING TO THE DELAY IN CANCER MANAGEMENT AND

ITS IMPLICATION FOR TREATMENT OUTCOMES FOR OVARIAN AND

GENITOURINARY MALIGNANCIES ACROSS TAMIL NADU – A

MULTICENTRIC MIXED METHOD STUDY.

PROPOSAL SUBMITTED TO TAMIL NADU HEALTH SYSTEM REFORM

PROGRAM

OPERATIONAL RESEARCH PROGRAM – 2022 – 2023

DEPARTMENT OF COMMUNITY MEDICINE

GOVERNMENT STANLEY MEDICAL COLLEGE

CHENNAI
 THE FACTORS LEADING TO THE DELAY IN CANCER MANAGEMENT AND

ITS IMPLICATION FOR TREATMENT OUTCOMES FOR OVARIAN AND

GENITOURINARY MALIGNANCIES ACROSS TAMIL NADU - A

MULTICENTRIC MIXED METHOD STUDY.

PROBLEM STATEMENT

INTRODUCTION:

According to World Cancer Research Fund International [1], 2020, globally,

18,094,716 million cases of cancer were diagnosed, of which 9.3 million cases are men and 8.8

million cases are women. India has a cancer incidence of 1314030 cases in both sexes. In both

sexes the percentage of total number of new urogenital and ovarian cancers cases diagnosed in

2020- prostate (7.8%) [4th rank], bladder (3.2%) [10th rank], kidney (2.4%) [14th rank], ovary

(1.7%) [18th rank], testis (0.4%) [27th rank] and penis (0.2%) [30th rank]. In males the

percentage of total number of new urogenital and ovarian cancers cases diagnosed in 2020-

prostate (15%%) [2nd rank], bladder (4.7%) [6th rank], kidney (2.9%) [9th rank], testis (0.8%)

[20th rank] and penis (0.4%) [24th rank]. In females the percentage of total number of new

urogenital and ovarian cancers cases diagnosed in 2020- ovary (3.6%) [8th rank], kidney

(1.8%) [14th rank] and bladder (1.5%) [17th rank].

National Cancer Registry Programme [2], 2012-2016, India, reported that the projected

cancer cases in India in 2025 is 5.1% for corpus uteri and ovary, 3% for prostate. Prevalence

of prostate and ovarian cancer in Chennai, Tamilnadu is 6.2% and 6.1%.

National Cancer Registry Programme, Clinicopathological Profile of Cancers in India:

A Report of the Hospital Based Cancer Registries, 2021, ICMR-NCDIR [3], reported that

Out of 610084 cancers, 319098 (52.4%) cancers were reported in males, and 290986 (47.6%)

in females. The highest proportion of prostate cancer was higher in those over 65 years of
age. Over 90% of the cancers in different organ sites got diagnosed by microscopic

examination. Among all the cancers, the highest proportion of distant metastasis at

presentation was seen in patients with lung cancer followed by gall bladder cancer and

prostate cancer (42.9%). Over one-third of patients with cancers of the kidney (including

children) and bladder had localized disease at the time of presentation. Regardless of the

organ site and clinical extent, most cancer patients, were initiated on cancer-directed

treatment within 8 to 30 days of diagnosis. one-third of the patients of prostate and bladder

cancer with localized disease, diagnosed at the reporting institution were initiated on cancer

directed treatment on the same day. In the younger age group (below 25 years), ovarian

cancers were the commonest cancer types. Among all the gynaecological cancers, the

proportion of patients presenting with distant spread was highest (nearly one-third) for

ovarian cancer. Nearly 42.9% of the prostatic cancer patients were diagnosed with distant

metastasis. Over a quarter of the male kidney cancer patients presented with distant

metastasis. Proportion of ovarian cancer was 6.3%, prostate (3%), kidney (2.1%) and bladder

(1.9%). Close to one- third patients with bladder cancer regardless of clinical extent and

prostatic cancer patients with localised disease diagnosed at the reporting institution initiated

cancer directed treatment on the same day.

Based on Tamil Nadu Cancer Registry Project [4], 2021, 69517 new cases were

diagnosed in year 2017 in the whole of Tamilnadu. The estimated new cancer burden is

81814 in Tamilnadu in year 2021. There were more women in cancer than men in Tamilnadu

for all cancers put together (1.2:1). The Crude Incidence Rate (CIR) of all cancers together

was 87.9 per 1,00,000 population for both sexes together in Tamilnadu state- Male: 79.2;

Female: 96.6. Highest CIR of all cancers and both sexes together was observed in Chennai

(143) and least was reported in Nilgiris (53.5) districts. Common cancers among men in

Tamil Nadu: Stomach (CIR:7.0), Lung (6.6), Mouth (6.6), Large bowel (5.6) and Tongue
(4.6).Common cancers among women in Tamilnadu: Breast (CIR: 25.5), Cervix (CIR: 18.7) ,

Ovary (CIR: 5.2). Incidence of various cancers among males in Tamilnadu- prostate (4.1%),

bladder (2.6%), penis (1.8%), kidney (1.4%), testis (0.6%), renal pelvis (0%), ureter (0%) and

urethra (0%). Incidence of various cancers among females in Tamilnadu- ovary (5.4%),

bladder (0.7%), kidney (0.6%), renal pelvis (0%), ureter (0%)and urethra (0%).

Even a 4-week delay of cancer treatment is associated with substantially increased

mortality across surgical, systemic therapy and radiotherapy indications for cancers and

stated that the association between delay and increased mortality was significant& further

concluded that policies focused on minimising system-level delays to treatment

commencement could potentially achieve substantial improvements in population-level

survival outcomes [5].

Various studies from all over the world had found out factors leading to delay in

cancer management which were further categorised into presentation delay, referral time,

health care delay. Factors for delay: decrease in awareness about risk factors, prognosis &

symptoms [6], financial burden [6], unaware of right doctor to approach [6], misinterpretation

of signs and symptoms [7], cultural influences [7], fear of losing body parts to surgery [7],

health providers laxity [7], infrequent screening for cancer [7], no drugs available at

government dispensary [7], spiritual reasons [7,11], denial of having a disease [8,11],

prioritising various life events over seeing a physician [8], view that medical care is nuisance

[9], desire to surrender to the natural course of things [9], higher family income and smoking

[10], self -treatment [10], increased referral time [10], employment status [10], increased

travel time and distance to hospital [10,11], increase in number of consultation with surgeon

before diagnosis [10], embarrassment of examination by a male doctor [11], fear of treatment

and its side effects [11], alternate system of medicine [11], lack of family support [11].
 Treatment delay is major contributor than the patient delay, also stated that women

with delay of more than 3 months had shorter survival than compared to women who started

treatment within 1st 3 months of symptom and presentation with late stages is associated with

poor performance status [11].

Delay in the initiation of definitive treatment might lead to decrease in loco-regional

control and overall survival. Elevated levels of fear of progression can affect patients well

being, quality of life and social functioning by psychological stress [12].

RATIONALE FOR THE PROPOSAL:

Delay in the treatment of cancer carries foundational significance since it is proved to

have adverse consequences on outcome in terms of increased mortality rates and poor

prognosis affecting the quality of life of patients as revealed in systematic reviews in

literature. Health seeking behaviour delays are profound among women for whom the

commonest factors for delay were patient (presentation delay) followed by the health

provider and healthcare sector delays. For surgery, there is a 6-8% increase in the risk of

death for every four-week delay. This impact is even more marked for some radiotherapy

and systemic indications. Such figures translate into significant population level excess

mortality. The corollary is that the survival gained by minimising the time to initiation of

treatment could potentially contribute to a greater magnitude and cost effective benefit on

patient outcomes than that seen with some novel therapeutic agents.

Nevertheless, there is a dearth of research and lack of high quality data on the impact

of deferred and delayed cancer treatment on the patients and families in Tamil Nadu.

Hence the current study is contemplated to provide meticulous data on the various

levels and patterns of delay and quantification of its impact on the patient and their

families. The inputs of the study could contribute towards planning and better

organization of zero delay cancer services in the state of Tamil Nadu.

OBJECTIVES:

1. To study the sociodemographic characteristics and clinicopathological profile of the

study participants with ovarian and genitourinary cancers.

2. To explore the factors leading to delay in cancer management amongthe study

participants.

3. To assess the treatment outcomes and quality of life (QoL) among them.

4. To correlate the delay in cancer management and its outcome.

METHODOLOGY

Study design:

Multicentric Convergent Parallel (Quan-Qual) Mixed methods study design with both

quantitative (Analytical cross sectional study) and qualitative (In-depth interview- Key

informant interview) components.

Study Setting:

Study setting is household for data collection and hospital records for data retrieval.

The participants would be identified from the master case sheets obtained from the Oncology

department of the respective tertiary care hospitals/ Regional Cancer Centre (whichever is

available in the district) representing all the 5 zones (North, South, East, West and Central)

and their contact details would be traced.

The qualitative component of the study (IDI) would be done among the purposively

selected key informants (Health care provider) and the consenting study participants or their

care givers (in case of deceased patients) following prior appointment, and the interview

would be held in their households.

Study Duration:

The study will be conducted between December 2022 and August 2023.
Study group:

Quantitative component:

The target population includes patients registered with genitourinary and ovarian

malignancies between 2017 and 2021 at the selected districts in Tamil Nadu.

The study population will be defined as follows: -

Inclusion criteria:

1. All women above 20 years registered with all types of urinary tract

malignancies and ovarian malignancies between 2017 and 2021 at the selected districts in

Tamil Nadu.

2. All men above 20 years registered with all types of genitourinary malignancies

between 2017 and 2021 at the selected districts in Tamil Nadu.

Exclusion criteria: -

1. Participants who are residing/ migrated to other states and countries.

2. Participants whose residence cannot be traced due to various reasons viz,

invalid phone number

3. Participants who are unwilling to give consent or cooperate for interview

Qualitative component:

To get first hand in-depth information on the delays in cancer management, the study

population will include

1. Participants with each type of malignancy (A subsample of 10% each of malignancy

of the genitourinary tract and ovary) from different geographical locations in various stages

of presentation.

2. Primary care givers of participants who are deceased at the time of interview

3. Health care providers in the selected districts.

Sample size:
S.No Type of Percentage of delay to seek References
cancer treatment
1. Bladder cancer 24% Hollenbeck BK et al, 2010[14]
2. Urothelial 22% Sundi D et al, 2012 [15]
cancer
3. Prostate cancer 15% Sun M et al,2012 Nov [18]
4. Penile cancer 45.7% Gao W et al,2016 [19]
5. Testicular 62% Dieckmann KP et al, 1987 [20]
cancer 27% Fossa SD et al, 1981 [21]
6. Renal cancer 21% Mano R et al, 2016 [22]
7. Ovarian cancer 45% Allgar VL et al, 2005 [24]
From the above ROL, the least delay proportion of 15% is considered for sample size
calculation.
Sample size (n) = Z2pq/d2
p = 15, q= 85 ,
d= 20% of p (relative precision) = 3
N = 3.84 x 15 x 85 / 32
N = 4896/9
N = 544
After adding non response rate of 30%,
N= 544 + 163 = 707 = 710.
Calculated sample size = 710 participants.

Sampling method:

Quantitative component:

Sampling frame - All men above 20 years registered with various types of

genitourinary malignancies and all women above 20 years registered with various types of

urinary tract malignancies and ovarian malignancies between 2017 and 2021 at the selected

districts in Tamil Nadu.

 The required sample size of 710 participants will be selected from the sampling frame

by simple random sampling.

Qualitative component:

The primary health care providers at the selected districts will be selected by non-

probability sampling method – Purposive sampling method

Based on the geographical distribution, participants with each type of cancer who

presented late (ie 3 months after symptom recognition) and the primary care givers of

participants who are deceased at the time of interview will be selected by non probability

sampling method – Purposive sampling method. Maximum variation sampling will be

employed to explore widest range of perspectives and factors contributing to diagnostic and

treatment delay. A subsample of 10% from each of the cancers will be considered for IDI and

subsequent patients will be qualitatively interviewed till redundancy of information is

achieved.

Study Tool:

Details on the tumour related characteristics and outcome will be obtained from the

patient case sheet and HBCR. Data on socio demographic and clinical details, medical

history, reproductive history, personal habits, details of treatment, factors for various delays

in cancer management and outcome will be obtained from a structured questionnaire

prepared based on previous literature. Quality of Life will be assessed based on standard

EORTC QLQ - C 30 questionnaire.

Additional information regarding delays in cancer management will be obtained

through an interview tool containing on outlined script and a list of open ended questions,

beginning with easy to answer questions followed by questions on informant’s opinions and

beliefs, ending with questions on general recommendations. Probing questions will be asked

during the interview to help clarify informant’s comments and get detailed information.
Data collection plan:

Data on the sociodemographic characteristics and clinicopathological profileof the

study participants will be obtained from the Cancer registry of the tertiary care hospitals in

the selected districts after obtaining permission from Institutional Ethics Committee, approval

from TNHSRP and administrative approval from the selected tertiary care hospitals.

The participants would be identified from the master case sheets and their contact

details would be traced. An appointment would be fixed with the consenting study

participants or their care givers (in case of deceased patients) and face-to-face interview

would be held in their households using the questionnaire ensuring strict confidentiality. Key

Informant Interviews (KII)would be done among the purposively selected key informants

from the selected districts. The interviews will be conducted at a convenient time in the local

language after obtaining written informed consent. The purpose of the study, the procedure to

be followed and its implications will be explained to all the participants. Proceedings will be

recorded on audio recorder enabled mobile phone. After the interview, summary of the

interview will be read back to the participants to ensure participant validation.

Data analysis:

Data will be entered in Microsoft Excel and statistical analysis will be done using

SPSS v 27 and Atlas ti 22. Transcripts will be prepared and summative approach to

qualitative content analysis will be undertaken to identify and quantify themes from the text

data. The procedure will be document preparation, open coding, grouping, categorization and

theme abstraction.

• The sociodemographic characteristics and the clinicopathological profile of the study

participants will be summarized using descriptive statistics. Continuous variables will be

expressed as mean and standard deviation and categorical variables will be expressed as

percentages.
• Delays will be summarised using median (interquartile range) number of days.

• The stage at diagnosis, factors for delay in cancer management and treatment

outcomes for each solid tumour will be expressed in percentages and association will be

analyzed using parametric and non-parametric tests.

• Pearson’s correlation test will be applied to correlate the delay in cancer management

and its outcome.

• Lead time, the time taken to treat (TTT), mortality to incidence ratio and 5 year

survival rates of patients by type and stage will be calculated for each of the solid tumours.

• Content and thematic analysis will be done using the transcripts prepared.

OPERATIONAL DEFINITION:
• Genitourinary cancers: Genitourinary oncology (GU Oncology) focuses on research
and treatment of urinary system cancers in both genders, as well as malignancies
affecting the male sexual organs [25].
• Access delay/ Patient interval/ Patient delay – Appraisal interval (period from
detecting a bodily change to perceiving a reason to discuss the symptoms with a
health-care practitioner) and Health-seeking interval (period from perceiving a need
to discuss the symptoms with a health-care practitioner to reaching the health facility
for an assessment)[13].
• Diagnostic delay/ Diagnostic interval/ system delay/ provider delay - accurate
clinical diagnosis (doctor interval), diagnostic testing & staging and referral for
treatment [13].
• Treatment delay/ interval – Timely, accessible, affordable, acceptable, high quality
treatment and also encompass abandonment or discontinuation of treatment [13].
• Global / Total delay/ overall delay – includes components of access delay,
diagnostic delay and treatment delay
EXPECTED OUTCOME OF THE STUDY: The following outcomes are expected
from the study:
• Both hard outcomes ( mortality and morbidity) and soft outcomes (Quality of life)
among cancer patients.
• Avoidable and preventable delays in the cancer care seeking pathway among the
study subjects.
• Barrier and facilitator analysis for treatment seeking for cancer.
• Patient centred cancer outcomes like symptom relief, patient satisfaction and unmet
psycho social needs among cancer patients.
• The inputs of the study would contribute towards planning and better organization of
zero delay cancer services in the State of Tamil Nadu.

PROPOSED PROJECT TEAM

PRINCIPAL 1. Dr.P.Seenivasan MD
INVESTIGATOR Prof &Head ,
Department of Community Medicine,
Govt Stanley Medical College,
Chennai
CO - PRINCIPAL 1.Dr.V.Srinivasan MD..DMRT
INVESTIGATOR Director,
Prof &Head,
Department of Radiation Oncology
Arignar Anna memorial Cancer
Institute,Karapettai,Kanchipuram

2.Dr.A.Evangeline Mary
Associate Professor,
Department of Community Medicine,
Govt Stanley Medical College,Chennai.

3.Dr.T.Susila
Associate Professor,
Department of Community Medicine,
Govt Stanley Medical College,Chennai.

4.Dr.R. Tamilarasi
Associate Professor,
Department of Community Medicine,
Govt Stanley Medical College,Chennai.

5.Dr.R.Yamuna Devi
Senior Assistant Professor,
Department of Community Medicine,
Govt Stanley Medical College,Chennai.

6.Dr.S. Krithiga
Senior Assistant Professor,
Department of Community Medicine,
Govt Stanley Medical College,Chennai.

7.Dr.D. Senthilarasi
Senior Assistant Professor,
Department of Community Medicine,
Govt Stanley Medical College,Chennai.

8.Dr.Sameeya Furmeen
Senior Assistant Professor,
Department of Community Medicine,
Govt Stanley Medical College,Chennai.

9.Dr. Doss prasanna

MD - Post Graduate, Department of Community Medicine,
Govt Stanley Medical College,Chennai.
 10.Dr.E.Pitchai kumaran
MD - Post Graduate, Department of Community Medicine,
Govt Stanley Medical College,Chennai.

11.Dr.P.Saranya
MD - Post Graduate, Department of Community Medicine,
Govt Stanley Medical College,Chennai.

12.Dr. Varshene
MD - Post Graduate, Department of Community Medicine,
Govt Stanley Medical College,Chennai.

13.Dr. Bamilan
MD - Post Graduate, Department of Community Medicine,
Govt Stanley Medical College,Chennai.

14. Dr. Yogeshwaran

MD - Post Graduate, Department of Community Medicine,
Govt Stanley Medical College,Chennai.

IMPLEMENTATION PLAN - GANTT CHART

S.No Task 1st 2nd 3rd 4th 5th 6th 7th 8th 9th 10th
month month month mont month mont month mont mont mont
h h h h h

Research Proposal
Proposal Submissio
n

1 Ethics
approval

2 Review of
literature

3 Data
Collection

4 Compilation
of Data
5 Analysis

6 Report
writing

7 Submission
of report

FUNDING:
Proposal has been submitted to TNHSRP – OR for approval and funding.

CONFLICT OF INTEREST:
Nil

HUMAN SUBJECTS PROTECTION:

The participants will be included in the study only after obtaining their consent. No invasive
procedures will be carried out on the participants during the study.

REFERENCES:
1. World Cancer Research Fund International- 2020. https://www.wcrf.org/cancer-
trends/global-cancer-data-by-country/
2. ICMR-NCDIR: Report of National Cancer Registry Programme-2020.
https://ncdirindia.org/All_Reports/Report_2020/default.aspx
3. ICMR-NCDIR, Clinicopathological Profile of Cancers in India: A Report of the Hospital
Based Cancer Registries, 2021, Bengaluru, India.
4. Sampath P, Swaminathan R on behalf of the TNCRP Study Group. Cancer incidence and
mortality (Year 2017), incidence trend (2012-2017) and estimates (2018-2021) for Tamil
Nadu state. Tamil Nadu Cancer Registry Project, Cancer Institute (W.I.A), Chennai,
2021.
5. Hanna TP, King WD, Thibodeau S, Jalink M, Paulin GA, Harvey-Jones E, O’Sullivan
DE, Booth CM, Sullivan R, Aggarwal A. Mortality due to cancer treatment delay:
systematic review and meta-analysis. bmj. 2020 Nov 4;371.
6. Basharat S, Shaikh BT, Rashid HU, Rashid M. Health seeking behaviour,
delayedpresentation and its impact among oral cancer patients in Pakistan: a retrospective
qualitative study. BMC health services research. 2019 Dec;19(1):1-9.
7. Agbokey F, Kudzawu E, Dzodzomenyo M, Ae-Ngibise KA, Owusu-Agyei S, Asante KP.
Knowledge and health seeking behaviour of breast cancer patients in Ghana. International
Journal of Breast Cancer. 2019 Apr 1;2019.
8. Kristýna ČA, Lucie KK, Markéta P, Peter T. Patient delay in presenting symptoms of
breast cancer in women in the Czech Republic. Klinicka Onkologie: Casopis Ceske a
Slovenske Onkologicke Spolecnosti. 2021 Jan 1;34(1):40-8.
9. Oshiro M, Kamizato M. Patients' help‐seeking experiences and delaying in breast cancer
diagnosis: A qualitative study. Japan Journal of Nursing Science. 2018 Jan;15(1):67-76.
10. Poum A, Promthet S, Duffy SW, Parkin DM. Factors associated with delayed diagnosis
of breast cancer in northeast Thailand. Journal of Epidemiology. 2014 Mar 5;24(2):102-8.
11. Kumar A, Bhagabaty SM, Tripathy JP, Selvaraj K, Purkayastha J, Singh R. Delays in
diagnosis and treatment of breast cancer and the pathways of care: a mixed methods study
from a tertiary cancer centre in North East India. Asian Pacific Journal of Cancer
Prevention: APJCP. 2019;20(12):3711.
12. Kumar D, Dey T. Treatment delays in oncology patients during COVID-19 pandemic: A
perspective. Journal of global health. 2020 Jun;10(1).
13. Guide to cancer early diagnosis. Geneva: World Health Organization; 2017. Licence:
CC BY-NC-SA 3.0 IGO.
14. Hollenbeck BK, Dunn RL, Ye Z, Hollingsworth JM, Skolarus TA, Kim SP, Montie JE,
Lee CT, Wood Jr DP, Miller DC. Delays in diagnosis and bladder cancer mortality.
Cancer. 2010 Nov 15;116(22):5235-42.
15. Sundi D, Svatek RS, Margulis V, Wood CG, Matin SF, Dinney CP, Kamat AM. Upper
tract urothelial carcinoma: impact of time to surgery. InUrologic Oncology: Seminars and
Original Investigations 2012 May 1 (Vol. 30, No. 3, pp. 266-272). Elsevier.
16. Korets R, Seager CM, Pitman MS, Hruby GW, Benson MC, McKiernan JM. Effect of
delaying surgery on radical prostatectomy outcomes: a contemporary analysis. BJU
international. 2012 Jul;110(2):211-6.
17. Tokuda Y, Chinen K, Obara H, Joishy SK. Intervals between symptom onset and clinical
presentation in cancer patients. Internal Medicine. 2009;48(11):899-905.
18. Sun M, Abdollah F, Hansen J, Trinh QD, Bianchi M, Tian Z, Briganti A, Shariat SF,
Montorsi F, Perrotte P, Karakiewicz PI. Is a treatment delay in radical prostatectomy safe
in individuals with low‐risk prostate cancer?. The journal of sexual medicine. 2012 Nov
1;9(11):2961-9.
19. Gao W, Song LB, Yang J, Song NH, Wu XF, Song NJ, Qiao D, Chen C, Zhang JY,
Wang ZJ. Risk factors and negative consequences of patient’s delay for penile carcinoma.
World journal of surgical oncology. 2016 Dec;14(1):1-7
20. Dieckmann KP, Becker T, Bauer HW. Testicular tumors: presentation and role of
diagnostic delay. Urologia internationalis. 1987;42(4):241-7.
21. Fossa SD, Klepp O, Elgjo RF, Eliassen G, Melsom H, Urnes T, Wang M. The effect of
patient's delay and doctor's delay in patients with malignant germ cell tumours.
International Journal of Andrology. 1981 Mar;4:134-44
22. Mano R, Vertosick EA, Hakimi AA, Sternberg IA, Sjoberg DD, Bernstein M, Dalbagni
G, Coleman JA, Russo P. The effect of delaying nephrectomy on oncologic outcomes in
patients with renal tumors greater than 4 cm. InUrologic Oncology: Seminars and
Original Investigations 2016 May 1 (Vol. 34, No. 5, pp. 239-e1). Elsevier
23. Dobson CM, Russell AJ, Rubin GP. Patient delay in cancer diagnosis: what do we really
mean and can we be more specific?. BMC health services research. 2014 Dec;14(1):1-6.
24. Allgar VL, Neal RD. Delays in the diagnosis of six cancers: analysis of data from the
National Survey of NHS Patients: Cancer. British journal of cancer. 2005
Jun;92(11):1959-70.
25. Bukowski RM. Genitourinary oncology: Current status and future challenges. Frontiers in
Oncology. 2011 Oct 10;1:32.

DRAFT QUESTIONNAIRE

I.SOCIO DEMOGRAPHIC DETAILS:

1. Name :
2. Age
3. Gender 1. Male
2. Female
4. Address 1. Rural
2. Urban
5. Education 1. Illiterate
2. Primary school
3. Middle school
4. High school
5. Higher secondary
6. Graduate
7. Professional degree
6. Marital status 1.Married
2.Unmarried
3. Widow/Widower
4. Divorced
7. Religion 1.Hindu
2.Christian
3.Muslim
8. Occupation
9. Type of family 1.Nuclear family
2.Joint family
10. Total members in
The family
11. Total family income
12. Decision maker in the family
13. History of smoking? 1.Yes 2.No
14. History of alcohol? 1.Yes 2.No
II.MENSTRUAL AND REPRODUCTIVE HISTORY
15. What was your age when you attained menarche?
16. Was your menstrual cycles regular (shorter 1.Yes
menstrual cycles)? 2.No
17. Have you attained menopause at the time of onset 1.Yes
of symptoms? 2.No
18. What was your age at the time of your marriage?
19. What was your age when you gave birth to your
first child?
20. How many children do you have?
21. Did you breast feed your children? 1.Yes 2.No
if yes , mention the duration
22. History of Intra uterine device? 1.Yes 2.No
If yes, mention duration
23. History of oral contraceptive pill intake? 1.Yes 2.No
If yes, mention the duration
24. Did any of your family members had
h/o
Ovarian Ca? 1. Yes 2.No
Genitourinary Ca? 1. Yes 2.No

III.SYMPTOM HISTORY:
25.When was the cancer first diagnosed?
Year ____________ Month _________ Date__________________
Specify the name of the health facility _______________________________________
26. A) Did you experience any symptoms before diagnosis? 1. Yes 2. No
B) If yes, what were the symptoms you had while approaching the health care
provider? (Mention its duration)
Genitourinary Cancer:
1. Dysuria /Hematuria/Urinary Incontinence
2. Sexual problems
3. Abdominal pain
4. Vomiting
5.Weight loss
6. Constipation
7. Others. Specify ________________________
Ovarian cancer:
1. Abdominal pain
2. Low backache
 3. Abdominal distension
4. Weight loss
5. Others. Specify __________________________
C) If No, specify the situation that led to the diagnosis of cancer
1. Incidental finding in blood test
2. Incidental imaging finding
3. Master health check up
4. Health camp
5. Others. Specify _____________________________
27. Did you visit multiple health facilities before confirming the cancer diagnosis?
1. Yes 2. No
If yes, narrate your experience ( Type of facility visited, reasons for visit, time interval,
investigations done if any, money spent)
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________

IV.REASONS FOR DELAY IN MANAGEMENT:

28. Time interval between onset of 1. Less than one week
symptoms and 1st consultation with health 2. One week to one month
care provider? 3. More than one month
29. Reasons for delay in consultation? 1. Misinterpretation of symptoms
2. Cultural influences
3. Prioritizing other life events
4. Inaccessibility of health services
5. Financial affordability
6. Sought alternate medical care
7. Others. Specify__________________
30. Time interval between 1st consultation 1. Less than one week
with health care provider and diagnosis? 2. One week to one month
3. More than one month
31. Reasons for delay in diagnosis? 1. Missed diagnosis by HCP
2. Inadequate diagnostic services
3. Sought alternate Care/opinion
4. Financial affordability
5. Others. Specify___________
32. Time interval between diagnosis and 1. Less than one week
initiation of treatment? 2. One week to one month
 3. More than one month
33. Reasons for delay in treatment? 1. Sought alternate Care/opinion
2. Lack of Drug Stock in Pharmacy
3. Financial affordability
4. Lack of Family Support
5. Misclassification of Disease Severity
6. Fear of Side effects
7. Fear of Surgery
8. Others. Specify___________
34. a. Was there a delay in diagnosis due 1. Yes
to COVID-19 Pandemic 2. No
34. b. Was there a delay in treatment due 1. Yes
to COVID-19 Pandemic 2. No
34. c. If Yes, What was the reason 1. Inaccessibility of Hospitals
2. Financial Crisis
3. Lack of beds in hospital
4. Lack of diagnostic services
5. Lack of drugs
6. Non- availability of Health care professionals
7. Fear of COVID-19 risk
8. Lack of treatment services
9. Others. Specify___________
35. Stage of the disease at the time of
diagnosis
36. Tumour sub type
37. Type of treatment advised 1. Surgery
2. Radiotherapy
3. Chemotherapy
4. Hormonal Therapy
5. Surgery+ Chemo+Hormonal
6. Chemo+Hormonal
7. Surgery +Radiotherapy
8. Surgery+Chemo
9. Palliation
10. Alternate system of medicine.
11. Others. Specify _________________
38a. Have you been following 1. Yes
pharmacological or radiation treatment 2. No
as prescribed?
38b. If No why 1. Side effects
 2. Cost
3. No improvement in symptoms
4. Others (specify)

V. UTILISATION OF HEALTH INSURANCE SCHEMES:

39. a. Do you have medical insurance? 1. Yes 2. No
b. If yes, specify the type of insurance
1. Government _________________________________________________
2. Private ______________________________________________________
40. A. Have you utilised the above medical insurance for cancer related diagnosis and
treatment?
1. Yes 2. No
40. B. If yes, specify the purpose for its utilisation
1. Diagnosis
2. Surgery
3. Chemotherapy
4. Radiotherapy
5. Palliative care
6. Others. Spacify _____________________________________________________
40. C. If no, mention the reason for not utilising the scheme.
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
41. Total amount spent for cancer diagnosis and treatment: ________________________
Amount covered under insurance : __________________________
Amount spent out of pocket: ________________________________

VI.OUTCOME:
42.Outcome of treatment 1. Complete Remission
2. Tumour Progression
3. Relapse
4. Death

43.Quality of Life EORCP-QLC

S.No Question Not at A little Quite a Very
all bit much
1. Do you have any trouble doing strenuous
activities, like carrying a heavy shopping bag or a 1 2 3 4
suitcase?
2. Do you have any trouble taking a long walk? 1 2 3 4
3. Do you have any trouble taking a short walk 1 2 3 4
 outside of the house?
4. Do you need to stay in bed or a chair during the
1 2 3 4
day?
5. Do you need help with eating, dressing, washing
1 2 3 4
yourself or using the toilet?
During the past week
6. Were you limited in doing either your work or
1 2 3 4
other daily activities?
7. Were you limited in pursuing your hobbies or
1 2 3 4
other leisure time activities?
8. Were you short of breath? 1 2 3 4
9. Have you had pain? 1 2 3 4
10. Did you need to rest? 1 2 3 4
11. Have you had trouble sleeping? 1 2 3 4
12. Have you felt weak? 1 2 3 4
13. Have you lacked appetite? 1 2 3 4
14. Have you felt nauseated? 1 2 3 4
15. Have you vomited? 1 2 3 4
16. Have you been constipated? 1 2 3 4
17. Have you had diarrhea? 1 2 3 4
18. Were you tired? 1 2 3 4
19. Did pain interfere with your daily activities? 1 2 3 4
20. Have you had difficulty in concentrating on
things, like reading a newspaper or watching 1 2 3 4
television?
21. Did you feel tense? 1 2 3 4
22. Did you worry? 1 2 3 4
23. Did you feel irritable? 1 2 3 4
24. Did you feel depressed? 1 2 3 4
25. Have you had difficulty remembering things? 1 2 3 4
26. Has your physical condition or medical treatment
1 2 3 4
interfered with your family life?
27. Has your physical condition or medical treatment
1 2 3 4
interfered with your social activities?
28. Has your physical condition or medical treatment
1 2 3 4
caused you financial difficulties?
For the following questions please circle the number between 1 and 7 that best
applies to you
29. How would you rate your overall health during the past week?
1 2 3 4 5 6 7
Excellent
30. How would you rate your overall quality of life during the past week?
1 2 3 4 5 6 7
Excellent